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National ALS Registry Anniversary

It’s been an incredible year for Amyotrophic Lateral Sclerosis (ALS) awareness! Not since Lou Gehrig made his famous “Luckiest Man on Earth” speech in 1939 has so much public attention been focused on ALS. Learn how the National ALS Registry is helping scientists learn more about this mysterious disease.

The ALS Ice Bucket Challenge

Chances are that you or someone you know has participated in, or at least heard of, the ALS Ice Bucket Challenge that swept the U.S. and beyond this summer. People with the disease, celebrities, politicians, even Homer Simpson and Kermit the Frog have all accepted the dare to dump icy cold buckets of water on their heads to raise funds and awareness for ALS.

What is ALS?

ALS, also known as Lou Gehrig’s disease, is a rapidly progressive, fatal neurological disease that affects nerve cells in the brain and spinal cord and causes muscle nerves to die. When this happens, the brain cannot initiate and control voluntary muscle movement. Patients in the late stages of the disease may be totally paralyzed and unable to speak or breathe on their own. ALS does not typically affect a person’s senses, personality, intelligence, or memory. People living with the disease remain aware of those around them and what is happening. There is no cure, and most people with ALS die 2-5 years after they are diagnosed.

How ATSDR is Fighting ALS

While the Ice Bucket Challenge has brought a tremendous amount of general awareness, , we still know little about the disease, including its cause(s), why ALS strikes some people and not others, and how to stop it. The federal Agency for Toxic Substances and Disease Registry (ATSDR) is working to learn more about the disease through its National ALS Registry. The goals of the Registry are to better describe the incidence and prevalence of ALS in the U.S., learn more about the possible environmental and occupational exposures that may increase someone’s risk of having the disease, and characterize the demographics—age, sex, race, and ethnicity—of people living with the disease.

Launched in October 2010, the National ALS Registry is the only population-based ALS registry for the United States. Because ALS is not a notifiable disease, the Registry takes new approaches to identify people living with ALS. Specifically, the Registry collects information on people with ALS by using existing data (e.g., from Medicare, Medicaid, and Department of Veterans Affairs) and new data from people who register through a secure web portal. The information gathered by the National ALS Registry is helping researchers:

more accurately estimate the number of new cases of ALS identified each year,

more accurately estimate the number of people with ALS at a specific point in time, and

better understand who gets ALS and what factors affect the disease.

This year the National ALS Registry released the first-ever prevalence estimates for ALS in the United States. From October 19, 2010–December 31, 2011, a total of 12,187 persons with ALS were identified through the Registry. This means that there are about 4 cases of ALS per 100,000 people in the U.S. general population. Overall, ALS was more common among people who are white, male, and non-Hispanic, and people between the ages of 60 and69. The age groups with the lowest number of persons with ALS were 18–39 years and older than 80 years. Read the full report here [575 KB]. ATSDR will continue to release annual reports.

Registry Enhancements

Currently, ATSDR is implementing new enhancements to the Registry for both patients and researchers including:

Online risk factor modules completed by people with ALS help scientists better understand the cause(s) of the disease. People with ALS can complete 15 brief risk factor modules when they enroll in the Registry. Six of the 15 modules were brought on line in 2014, including lifetime residential history, caffeine use, and home pesticide use. Additional risk factor modules are expected to be brought on line in late 2014.

State and metropolitan area-based ALS surveillance assists researchers in evaluating the completeness of the Registry, obtaining reliable information on the incidence and prevalence of the disease, and describing the characteristics of people living with ALS. Three states (Florida, New Jersey, and Texas) and eight cities (Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia, and San Francisco) have taken part in surveillance projects to date. Findings will be released when available.

A research notification system informs people with ALS about new research studies (e.g., clinical trials, epidemiological studies). To date, more than 15,000 Registry enrollees have been notified via email about clinical trials and/or studies for which they are eligible. Investigators across the United States are using the National ALS Registry to recruit patients for research studies and clinical trials (list).

A biorepository study evaluates the feasibility of collecting biospecimens (blood, hair, nails, tissue, etc.) from individuals around the United States who have enrolled in the National ALS Registry. Hundreds of biospecimens have been collected from Registry enrollees for this study, which will conclude in September 2015. Connecting biospecimens to information collected from enrollees will make the Registry even more useful for researchers.

Research funds are being used for external studies to provide a better understanding of the disease. Additionally, research helps ATSDR prioritize topics for future ALS risk factor surveys.

Mobile apps available on Apple and Android platforms allow people with ALS and caregivers to find the nearest ALS clinics and support groups.